KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
My signature since I joined dKos back in 2004 has included a favorite quote from Teddy Roosevelt: "The government is us, you and me."
In the last few years, my wife and I provided care and support to an elderly neighbor who, at 93 with no family, was living with physical disabilities that in the end required an overhead lift and all manner of help from direct-caregivers, paid and unpaid.
Our friend passed away back in February, and I'm still processing all that the experience has taught me.
Our friend was a B-24 pilot in WW2 who flew 69 missions in the "Forgotten War" -- up over "The Hump" in China-Burma-India. Afterwards, he stayed in the Army/Air Force and did two tours in Europe in the 1950s, one of them as head of Army Entertainment. Part of his job back then was flying Bob Hope and Danny Kaye and others around on their visits to the troops.
In the last three years of his life, he went from living alone in his apartment of 35 years, to receiving 12 months of daily in-home support from a patchwork quilt of direct-care workers (for urinary incontinence -- he was too frail to stand on his own to change his briefs), to living in a bad assisted living residence for four months, to living in a slightly better assisted living community for eight months, to living for five months at home with us after a preventable hospitalization that prevented his return to the assisted living residence, to living his final six months in a benevolent but institutionalized nursing home.
I have a PhD in gerontology and nothing in my training or work experience (which includes working for an organization that champions direct-care workers and those who work with them) really prepared me for the challenge of supporting our friend. I learned firsthand that those who provide hands-on care and support to elders and persons living with disabilities are our real, often invisible heroes.
Below I share some charts on the demographic imperative for more and better supported direct-care workers, and I invite you to contribute your insights about how we can make this issue resonate with elected officials and the broader public.
The direct-care workforce is us, you and me.